Supporting children with burns: Developing a UK parent-focused peer-informed website to support families of burn-injured children

Abstract

BackgroundChildren’s burn injuries can have a significant psychosocial impact on parents. However, the stress involved in caring for a child following a burn can often go unrecognized and does not necessarily prompt help seeking by parents. ObjectiveIt is common for adults to seek health-related support and information via the Internet. Many benefit from immediate and easy access to online psychological interventions. A prototype burn-specific, parent-focused, peer-informed, supportive website, designed to provide easy access to information and psychoeducation, was created and tested for acceptability. Patient involvementUsing a partnership-based method of website development, parents and professionals (clinical, academic and support organizations) were recruited and their particular expertise was acknowledged and valued. A participatory action approach was adopted to determine the acceptability of the website for parents/carers. Methods31 participants (9 parents, 22 professionals) tested a prototype version of the website. Data was collected using the eHealth Impact Questionnaire and the concurrent think-aloud protocol. ResultsParents and professionals had favorable opinions of the website. Parents’ ratings tended to be more favorable than professionals’, which was significant for the information and presentation. Participants’ thoughts were categorized into seven topics: need, structure/navigation, trust/relevance, language/comprehension, therapeutic content, mode of delivery, and suggested improvements. DiscussionMany practical and psychological barriers can prevent parents of burn-injured children accessing psychosocial support and contribute to a feeling of isolation. Participants felt that the website would be a valuable addition to UK pediatric burn care. The existence of an accessible resource could help to normalize parents’ experience of their child’s injury and reduce their perceived isolation, although peer interaction is not provided by the website. Practical valueThis online resource, hosting information and peers’ personal experiences, offers promising and exciting opportunities to empower parents whilst providing accessible supportive advice to encourage self-care and formal/informal support seeking when necessary.